'C' Stands For Cancer And Child

NEWPORT NEWS — Thomas Gosser and his parents will head to Washington to tell Congress about a boy's "adventure" with a rare disease.

Thomas Gosser calls his cancer "an exciting and traumatic adventure."

It's an adventure that started two years ago with some pain in his hip, and continues Monday and Tuesday with a trip from Newport News to Washington to tell congressional leaders and staffers his story.

Thomas, his younger brother Mark, and their parents, will be among 300 families descending on the hill next week with an advocacy group called CureSearch to support the Conquer Childhood Cancer Act of 2007.

Thomas was just 6 in the spring of 2005 when he began complaining of pain in his right hip.

Doctors offered a variety of theories: Could a problem with his toe be causing a funny stride?

Could he be suffering from bumps and bruises received at school?

They recommended treating him with over-the-counter children's pain reliever.

"It hurt," Thomas said. "And I didn't like it."

When Thomas didn't want to play on a family vacation in August and eventually ended up using a wheelchair, his parents knew something more was wrong.

X-rays revealed, and further tests confirmed, Thomas had an inoperable form of Ewing's sarcoma, a rare cancer of the bones or soft tissue.

He was immediately admitted to Children's Hospital of the King's Daughters in Norfolk to begin a 13-month clinical trial to treat the tumors growing in his hip.

"When it finally sunk in, the walls started closing in on me," said his mother, Linda Manning.

"I was angry and scared. I couldn't believe he had cancer. How dare cancer be a part of his life.

"The part that made me almost pass out was that he only had a 20 percent chance of survival," Manning said.

"I was terrified that my son was going to die," said David Gosser. "I was mortified. I was crushed. We had a strong sense of hope, but it was such a tough prognosis."

Manning, an assistant professor in the communications department at Christopher Newport University in Newport News, became their son's primary caretaker, taking him to CHKD for treatments and administering other medications at home.

And it all took quite a toll on Thomas.

His hair fell out, and as a result everyone knew he had cancer and oftentimes people would stare.

That year for Thanksgiving dinner he had just a few mouthfuls of strawberry yogurt for dinner. Mouth sores from his treatment made it difficult for him to eat much else.

"He was like this 80-year-old man in a 7-year-old body," she said.

When the trial ended six months ago, new scans showed that the cancerous mass had shrunk and was stable, Gosser said.

Thomas has to go through a new round of tests every three months, and so far there has been no new evidence of disease.

"Tommy is here because of a clinical trial," said David Gosser, who has taught at CNU as an adjunct professor .

But the family knows other children who haven't been so lucky.

One friend, a young girl, is back at CHKD just three months after completing her first round of treatment.

That's why the family is going to Washington with CureSearch -- a partnership between the National Childhood Cancer Foundation and the Children's Oncology Group -- to lobby for more funding for childhood cancer research.

"Somebody has to be an advocate for the children, and for the families who can't be there themselves," Gosser said.

"I want to be there to put a face on this," Manning said.

The Conquer Childhood Act of 2007 would authorize $30 million a year in the next five years to support biomedical research for pediatric cancer research.

It also would establish a national childhood cancer registry, which would make it easier for researchers to study cancer and the long-term effects of treatment, and to provide information and education services for families coping with childhood cancer.

"I want to get up there and give a voice to all the emotions we went through," Gosser said.

"Thirty million dollars doesn't sound like a large price to pay for the 12,000 kids diagnosed with cancer each year." *

Two years ago Tommy Gosser was diagnosed with Ewing's sarcoma. His family will visit Washington, D.C., Monday and Tuesday to support the Conquer Childhood Cancer Act 2007.

What is Ewing's sarcoma?

It's the common name for primitive neuroectodermal tumor, a rare disease in which cancer cells are found in the bone or soft tissue. The most common places for it to occur are in the pelvis, femur, humerus or ribs. Ewing's sarcoma cells can also spread to other areas of the body, including the bone marrow, lungs, kidneys, heart, adrenal gland and other soft tissues.

Who gets it?

Most often children between the ages of 10 and 20. The number of males affected is slightly higher than the number of females.

What are the symptoms?

Pain and swelling in the affected area.

What is the Conquer Childhood Cancer Act of 2007?

It would provide $150 million for pediatric oncology research into a variety of cancers over the next five years.

Where can I get more information?

CureSearch is a children's oncology group representing health care professionals, researchers and children with cancer. Visit their Web site at www.curesearch.org.